https://www.facebook.com/UnitedNetworkForOrganSharing/?fref=photo
Wednesday, May 11, 2016
Monday, May 9, 2016
WHY WE NEED TO BE MORE ACTIVE ON SOCIAL MEDIA
WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
By Jim Myers, Kidney Advocacy Committee LiaisonWHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
Social media is a fun and interesting way to communicate. It is also a great tool for raising awareness for kidney disease! Why use social media? It is one of the most authentic ways to communicate to your legislators. Additionally, it is also a great way to amplify your message. During an average 8 hour day at a kidney table, I might see 50 people. Over the same period of time on social media, I reach over 10,000 people, sometimes as many as 100,000 persons in a week!
USING SOCIAL MEDIA TO AFFECT PUBLIC POLICY
Most elected officials use multiple social media accounts, including Facebook, Instagram, LinkedIn, and Twitter. The form and content of communication is only limited by your imagination. Many kidney organizations have public policy action pages to help you advocate and shape public policy, like this one from the National Kidney Foundation, that also allow you to “tell your story” to your elected officials.
You can use social media to:
- Inform, discuss, update, and influence others about kidney disease policy and legislation
- Develop a collective voice and collaborate
- Share knowledge about kidney disease
- Influence the behavior and decisions of your elected officials
- Meetings in Washington, DC
- Local (District) meetings and town halls
- Dialysis clinic visits
- Local NKF events, like Kidney Walks or KEEP Healthy screenings
Blogs are also a great tool to express your point of view or share an idea. You can use them to create original content, add photos and video, or host an opinion poll. Free, quick and easy, blogs platforms, such as WordPress and Tumblr, can give you instant visibility. Make sure you ask all your friends to like your blog and Facebook pages, and comments, and to share them. You can also share the page with general public, on other kidney pages, and in kidney groups to raise your circulation.
By establishing constant contact with your elected officials and their staff, you can become a trusted source of information related to kidney issues and legislation. This trusted relationship can help you get attention when sharing content (I like to send my government officials links to posts on the NKF’s Advocacy in Action blog) or when you ask them to co-sponsor a bill.
Using other media to promote a bill or issue
There are several websites that help you prepare, solicit, and transmit petitions that are designed to promote a kidney disease bill or important kidney issue. They include:
- Org- Petition supporting kidney donors’ rights
- I Petitions.com
- Social Bright – a directory of petition sites
- We the People – petition the Whitehouse
Questions? Contact me at kidneystories@hotmail.com or www.facebook.com/jamesmyers3.
About Jim
James Myers is the Statewide Advocate for the National Kidney Foundation for the State of Indiana. He is a member of the Kidney Advocacy Committee. He is the inaugural winner of the 2016 Social Media Advocate Award for the American Association of Kidney Patients. On April 27, 2016, he received a kidney transplant! http://www.chicagotribune.com/suburbs/post-tribune/opinion/ct-ptb-davich-kidney-donor-found-st-0508-20160506-story.html
Tireless Advocate Organ Donation gets the Call!!
Tireless advocate for organ donation finally gets 'the call'
James Myers looked weary but cheerful when he returned home from an Indianapolis hospital with his little bundle of joy.
It weighed a quarter of a pound, and was the size of a fist. It's name is "Woody."
"It's a family name," said Myers, 61, of Gary.
After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.
At 11 a.m. that day, Myers posted on his Facebook page: "I just got THE call. IU says they have a kidney for me!"
This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: "My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…"
I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.
"I am a type O blood type," Myers wrote again and again to friends, followers and strangers. "All medical costs are covered by insurance and incidental costs can be worked out."
When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.
With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.
Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.
His genetic fate caught up to him in 2012 and he had been on dialysis ever since. "I have no choice. You either submit to dialysis or you die," Myers told me that day.
Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.
This was the dilemma Myers faced each day, each week, each month.
He didn't settle for only waiting and wondering or for posting pleading messages on social media for a life-saving transplant.
Myers became a tireless advocate for kidney donation, organ donation, live donor legislature and anything related to kidney disease. He put a local face on the national "Share your spare" live donor campaign.
He became a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation.
He became an outspoken activist on behalf of thousands of dialysis patients throughout Northwest Indiana. He became their voice. And their hope.
He traveled to Washington, D.C., to meet with lawmakers, including U.S. Rep. Pete Visclosky, D-Merrillville, and U.S. Sen. Joe Donnelly, D-Ind. On behalf of the Kidney Advocacy Committee, he advocated against budget cuts and for the Living Donor Protection Act.
Myers alerted us that he was among more than 400,000 Americans with irreversible kidney failure. And that more than 26 million people in this country struggled with chronic kidney disease, a figure that's growing each year. Millions of others are at increased risk but have no clue about it, according to the National Kidney Foundation.
"It could be any of us someday sitting in the same dialysis chair as Myers," I wrote in 2013.
Since then, I've talked with several other Northwest Indiana residents who were diagnosed with kidney disease or kidney failure and had to undergo dialysis. Some of these patients are kids.
"These children have unique issues among dialysis patients, and are one of the fastest growing dialysis groups," Myers told me recently.
This is why he started a new foundation for pediatric dialysis patients and their parents. It's something Myers is very proud of, and rightfully so.
He has met hundreds of patients through his advocacy. His Facebook page lists post after post for other people also waiting for that phone call. The same call Myers received April 26.
"Jim, we have a kidney for you," the nurse said.
That day, Myers was admitted into Indiana University Health in Indianapolis, in the organ transplant unit. His transplant surgery took place the next day, April 27, under the care of Dr. William Goggins.
The procedure went smoothly and Myers said there were no serious problems.
Because Myers is polycystic, surgeons removed only one kidney and transplanted a new one. They will remove his other kidney at another time.
Myers is thrilled to have the one kidney. Still, he's now waiting and wondering if the anti-rejection drugs will allow his body to accept it. Only time will tell.
He's not sure if all his advocacy played a role in getting that call. Or maybe it was fate. Or divine intervention. Or random luck. He also doesn't know the donor of his new kidney. He's forever thankful.
Within hours after he returned home, his tireless advocacy got transplanted into a new campaign. He asked for signatures on his petition for the Living Donor Protection Act.
"I got my chance, can you help someone else get theirs?" he asked.
jdavich@post-trib.com
Twitter @jdavich
Learn more:
For more information on kidney disease or to become a living donor or organ donor, call the National Kidney Foundation at 800-622-9010, or visit https://www.kidney.org/.
It weighed a quarter of a pound, and was the size of a fist. It's name is "Woody."
"It's a family name," said Myers, 61, of Gary.
After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.
At 11 a.m. that day, Myers posted on his Facebook page: "I just got THE call. IU says they have a kidney for me!"
This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: "My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…"
I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.
"I am a type O blood type," Myers wrote again and again to friends, followers and strangers. "All medical costs are covered by insurance and incidental costs can be worked out."
When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.
With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.
Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.
His genetic fate caught up to him in 2012 and he had been on dialysis ever since. "I have no choice. You either submit to dialysis or you die," Myers told me that day.
Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.
This was the dilemma Myers faced each day, each week, each month.
He didn't settle for only waiting and wondering or for posting pleading messages on social media for a life-saving transplant.
Myers became a tireless advocate for kidney donation, organ donation, live donor legislature and anything related to kidney disease. He put a local face on the national "Share your spare" live donor campaign.
He became a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation.
He became an outspoken activist on behalf of thousands of dialysis patients throughout Northwest Indiana. He became their voice. And their hope.
He traveled to Washington, D.C., to meet with lawmakers, including U.S. Rep. Pete Visclosky, D-Merrillville, and U.S. Sen. Joe Donnelly, D-Ind. On behalf of the Kidney Advocacy Committee, he advocated against budget cuts and for the Living Donor Protection Act.
Myers alerted us that he was among more than 400,000 Americans with irreversible kidney failure. And that more than 26 million people in this country struggled with chronic kidney disease, a figure that's growing each year. Millions of others are at increased risk but have no clue about it, according to the National Kidney Foundation.
"It could be any of us someday sitting in the same dialysis chair as Myers," I wrote in 2013.
Since then, I've talked with several other Northwest Indiana residents who were diagnosed with kidney disease or kidney failure and had to undergo dialysis. Some of these patients are kids.
"These children have unique issues among dialysis patients, and are one of the fastest growing dialysis groups," Myers told me recently.
This is why he started a new foundation for pediatric dialysis patients and their parents. It's something Myers is very proud of, and rightfully so.
He has met hundreds of patients through his advocacy. His Facebook page lists post after post for other people also waiting for that phone call. The same call Myers received April 26.
"Jim, we have a kidney for you," the nurse said.
That day, Myers was admitted into Indiana University Health in Indianapolis, in the organ transplant unit. His transplant surgery took place the next day, April 27, under the care of Dr. William Goggins.
The procedure went smoothly and Myers said there were no serious problems.
Because Myers is polycystic, surgeons removed only one kidney and transplanted a new one. They will remove his other kidney at another time.
Myers is thrilled to have the one kidney. Still, he's now waiting and wondering if the anti-rejection drugs will allow his body to accept it. Only time will tell.
He's not sure if all his advocacy played a role in getting that call. Or maybe it was fate. Or divine intervention. Or random luck. He also doesn't know the donor of his new kidney. He's forever thankful.
Within hours after he returned home, his tireless advocacy got transplanted into a new campaign. He asked for signatures on his petition for the Living Donor Protection Act.
"I got my chance, can you help someone else get theirs?" he asked.
jdavich@post-trib.com
Twitter @jdavich
Learn more:
For more information on kidney disease or to become a living donor or organ donor, call the National Kidney Foundation at 800-622-9010, or visit https://www.kidney.org/.
Copyright
© 2016, Post-Tribune
Wednesday, April 13, 2016
LEGISLATORS CO-SPONSOR LIVING DONOR PROTECTION ACT
Good afternoon KAC! Good news! We have officially picked up eleven new sponsors for the Living Donor Protection Act (H.R. 4616/S2584). This is a great win for us all, given all the hard work that you have put into our advocacy efforts on this bill. For those of you in these districts (and states), I will be sending along a line to use in social media posts to thank them, as a constituent, for signing onto this bill as a sponsor.
This is only the first step though! We need to keep pushing our Representatives and Senators who have not signed onto this bill.
Andrew
Elected Official
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Date
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Action
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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04/12/2016
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New Cosponsor
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ANDREW W. FULLERTON
Government Relations Manager T: 202.244.7900 ext 709 5335 Wisconsin Ave NW
Suite 300
Washington, DC 20015
www.kidney.org JIM'S NOTE: YOU CAN HELP PERSUADE OTHERS TO CO-SPONSOR, SIGN AND SHARE! https://www.change.org/p/support-hr-4616-s-2584-the-living-donor-protection-act |
Sunday, April 3, 2016
Region residents turn to social media for organs
Region residents turn to social media for organs
LANSING — Nora Sintich is running out of options.
She's been on the liver transplant waiting list for 14 years, her condition worsening. She can no longer eat bananas, peanuts or pineapples. She uses a walker to get around.
"I don't know how to read anymore. I used to be a bookkeeper — I can't add anymore," said Sintich, a slight, frail woman of 49 who labors when she speaks. "I have trouble with speech. I can't pronounce words right. I never knew the liver was so important."
Then she met a woman who encouraged her to tell her story on social media. Sintich is the opposite of tech savvy — her son equipped her with a personal Facebook page just this past December — but she decided to give it a shot anyway.
Since setting up her page in January, the Lansing grandmother already has received several queries from people interested in donating (donors give a portion of their liver, which regenerates in a matter of months). While the majority were from foreigners offering to sell their livers, a practice illegal in the United States, one came from a woman in Michigan with the same blood type.
As social media proliferates, people on transplant waiting lists are increasingly turning to sites like Facebook and Twitter to find living donors. Social media allows users to broadcast their stories to strangers across the world, at a time when 120,000 Americans await lifesaving transplants.
Dr. Deepak Mital, director of the kidney transplant program at Advocate Christ Medical Center in Oak Lawn, said more and more people on the list at his facility have been taking to social media.
He noted that all living donors have to go through a rigorous evaluation process, meeting with a social worker and psychologist, to ensure they're doing it for the right reasons.
"We apply the same standards to donors who come through social media as those who came through personal contact," he said. "You have to make sure there was no coercion, no financial exchange and that this is all on the up and up."
When Jim Myers, of Gary, started dialysis about five years ago, he was dismayed by all the suffering he saw around him, by the number of people unable to speak for themselves. Active in social media since the days of MySpace, Myers decided to start a Facebook page called Kidney Stories to spread awareness about kidney disease. He now administers about 30 pages for people in need of organ transplants.
"I've done all the other stuff: knocked on doors, manned tables. At an event, I might reach 25 to 50 people," said the former college professor. "On social media, I'm reaching close to 100,000 people a week."
It also gives himself something to do during treatment. Myers, 61, has polycystic kidney disease, a hereditary condition that causes cysts to grow on the organs. He does dialysis four times a week, for three hours at a time.
On a recent day at a Dyer dialysis clinic, Myers typed at his laptop with his right hand, his left arm hooked up to blood-filled tubes leading to a machine that filtered the toxins out of his body.
"This is one I opened this week," Myers said, pointing to his computer screen, his browser open to dozens of pages. "The guy's from Georgia. I've got him up to 119 likes in a couple days."
Last year, Myers won the inaugural Social Media and Advocacy Award from the American Association of Kidney Patients. "I'm on three transplant lists. I have good doctors that look after me," he said. "I hope to find my own donor, but I really enjoy helping other people."
Inspired by her dad receiving a liver transplant five years ago, Laurie Lee, of Cary, Ill., now tries to help others make similar connections. After meeting Sintich recently, she helped set up her Facebook page, Looking for a Liver for Nora.
"Right now, with millennials, they're altruistic and looking to help people," said Lee, 35. "And those are the people on social media. There's a ton of potential."
Sintich is willing to give it a try. Several of her loved ones have been tested to see if they'd be candidates, to no avail. Her condition has progressed, but not to the point where she'd move to the top of the waiting list.
She has a hereditary form of cirrhosis of the liver, a disease that took the life of her sister at the age of 40. She also has hepatic encephalopathy, a decline in brain function, as well as a movement disorder.
"I've spent so much time in the hospital, the nurses call me the frequent flyer," she said.
But her doctors have told her her health would largely return to normal with a successful transplant. If that happens, she plans to volunteer for a Chicago-based transplant organization and her husband, Doug, intends to donate his liver to a stranger.
"My grandma made it to 98. I tell my dad I'm going to beat grandma," she said. "I fight because I have two granddaughters (5 and 2). I tell my son I'll be at their college graduation."
Guest
Commentary-Support the Living Donor Protection Act
I am
asking people today to contact their Representatives in Congress and ask them
to co-sponsor and support The Living Donor Protection Act. (HR 4616/ S 2584).
This law is designed to
remove hurdles for people that want to donate kidneys. Specifically, according to the National
Kidney Foundation, it does 3 things:
1. Prohibits life, disability, and long term care
insurance companies from denying or limiting coverage or charging higher
premiums for living organ donors;
2. Clarifies
that living organ donors may use the Family Medical Leave Act to recover from
the surgeries and procedures involved in their donation without fear of losing their
job or benefits; and
3. It
will cost the federal government no money.
The American Society of
Nephrology has stated that the Act could potentially save Medicare between $565
million and $1.2 billion over 10 years.
When you consider that:
· There
are 26 million Americans are afflicted with Chronic Kidney Disease;
· 470,000
are on dialysis;
· Over
100,000 are on a waiting list for a kidney transplant;
· Only
about 17,000/year get transplanted
· 12
Americans die every day waiting on that list for a transplant, that’s over 4000
people every single year;
We should do everything
we can to make sure donors are not penalized by their insurance companies or
employers when they want to donate.
You can help by contacting
your Congressperson and Senators and request that they co-sponsor the bill. Just follow this link and sign up: https://www.change.org/p/support-hr-4616-s-2584-the-living-donor-
protection-act/u/15697199.
Sunday, March 13, 2016
2016 Kidney Patient Summit Issue Briefs -Living Donor Protection Act
2016 Kidney Patient Summit
Issue BriefsFor more information contact Troy Zimmerman at Troyz@kidney.org
Living Donor Protection Act
Issue: Many individuals have experienced higher premiums or denial of coverage insurance based solely on their status as a living organ donor. Additionally, there is no federal protection to ensure that organ donors don’t lose their jobs for taking time off for the transplant surgery and recovery. Fear of lack of insurance protection, higher premiums, and loss of job are barriers for someone who wants to donate an organ.
Background: Kidneys can be donated by a living individual in good health. The wait list for a kidney transplant is long and many individuals will die before ever receiving a kidney transplant. There are over 100,000 people waiting to receive a kidney transplant. In 2014, 17,108 kidney transplants were performed, one-third of which were made possible by living donors. Living donors make a substantial contribution to increasing the number of transplants performed each year.
The risks of living kidney donation are minimal and while long-term effects on donors need further study, most kidney donors go on to live normal healthy lives after organ donation. There is no medical evidence to suggest that insurance companies are at increased financial risk for covering living donors and therefore companies should not charge higher premiums nor deny or limit coverage just because an individual has donated an organ.
Request: Cosponsor and help pass legislation to protect the rights of living donors and remove barriers to organ donation. The Living Donor Protection Act (H.R. 4616/S. 2584), introduced by Representative Jerrold Nadler (D-NY) and Representative Michael Burgess, MD (R-TX)and Senator Mark Kirk (R-IL) and Senator Kirsten Gillibrand (D-NY), will protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long term care insurance to living donors, and from charging higher premiums. The bill clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.
Issue BriefsFor more information contact Troy Zimmerman at Troyz@kidney.org
Living Donor Protection Act
Issue: Many individuals have experienced higher premiums or denial of coverage insurance based solely on their status as a living organ donor. Additionally, there is no federal protection to ensure that organ donors don’t lose their jobs for taking time off for the transplant surgery and recovery. Fear of lack of insurance protection, higher premiums, and loss of job are barriers for someone who wants to donate an organ.
Background: Kidneys can be donated by a living individual in good health. The wait list for a kidney transplant is long and many individuals will die before ever receiving a kidney transplant. There are over 100,000 people waiting to receive a kidney transplant. In 2014, 17,108 kidney transplants were performed, one-third of which were made possible by living donors. Living donors make a substantial contribution to increasing the number of transplants performed each year.
The risks of living kidney donation are minimal and while long-term effects on donors need further study, most kidney donors go on to live normal healthy lives after organ donation. There is no medical evidence to suggest that insurance companies are at increased financial risk for covering living donors and therefore companies should not charge higher premiums nor deny or limit coverage just because an individual has donated an organ.
Request: Cosponsor and help pass legislation to protect the rights of living donors and remove barriers to organ donation. The Living Donor Protection Act (H.R. 4616/S. 2584), introduced by Representative Jerrold Nadler (D-NY) and Representative Michael Burgess, MD (R-TX)and Senator Mark Kirk (R-IL) and Senator Kirsten Gillibrand (D-NY), will protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long term care insurance to living donors, and from charging higher premiums. The bill clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.
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